Creating a Consumer-Centred System
Anthony Hill
Health and Disability Commissioner
Vision
Cartwright Vision
“[I] advocate a system which will encourage better communication between patient and
doctor, allow for structured negotiation and mediation, and raise awareness of patients’
medical, cultural and family needs. The focus of attention must shift from the
doctor to the patient.”
Judge Cartwright, 1988, page 176
Cartwright Report
“Administrators and health professionals need to listen to their patients, communicate with
them, protect them, offer them the best health care within their resources, and bravely
confront colleagues if standards slip.…
Hospital Board (or Area Health Board) representatives should take greater responsibility for
the patients’ welfare. They should ensure that the duty to safeguard the patients’ health is the
administration’s paramount consideration at all times. “
Judge Cartwright, 1988, page 172
Bristol, 2001
“Placing the safety of patients at the centre of the hospital’s agenda is the crucial first step
towards creating and fostering a culture of safety. This means that safety must be everyone’s
concern, not just that of the consultant, or the nurse in charge. …The safety of patients, the
safety of their clinical care, is a matter for everyone, from the trust boardroom to the ward
assistants… Safety requires leadership from the highest level of management. It requires
constant vigilance. It should be considered in everything that the organization does. It is not
a short term project but a commitment for 365 days a year. A culture of safety can only
really be created when a concern for patients’ safety is embedded at every level of the
organisation.”
The Report of the Public Inquiry into children’s heart surgery at the Bristol Royal
Infirmary 1984–1995 (Available at: http://www.bristol-inquiry.org.uk)
An international perspective: 20 years on
“We envisage a culture that is open, transparent, supportive and committed to learning;
where doctors, nurses and all healthcare workers treat each other and their patients
competently and with respect, where the patient’s interest is always paramount; and where
patients and families are fully engaged in their care…We envisage a culture centered on
teamwork, grounded in mission and purpose, in which organisational managers and boards
hold themselves accountable for safety and learning to improve.”
Leape et al 2009
HDC vision: A consumer-centred system
Engagement
Transparency
Consumer
Centred
System
Seamless Service
Culture
Consumer-centred culture
What is culture?
 Culture is the “values, beliefs, and perceptions that surround the behavior of people
working in a hospital or a health system”. (Singer el at “Relationship of safety climate and
safety performance in hospitals” 2009)

Culture exerts a powerful influence on people’s disposition to identify behaviours,
assumptions or omissions that can lead to medical errors. (Clancy “New Research
Highlights the Role of Patient Safety and Safer Care” 2011)
HDC jurisprudence
Culture, and its impact on safety and quality, has often been a key consideration in HDC
Opinions:
 A number of HDC cases have talked about encouraging a culture within a hospital
“where it is acceptable and even commonplace for questions to be asked, to and from
any point in the hierarchy, at any time” (Opinion 09HDC01146, April 2011 )
 Health care professionals have a duty to strongly advocate any concerns about a
consumer’s health care, on behalf of the consumer (Opinion 09HDC01592, January 2012)
Culture within any health and disability system should be characterised by:
 Transparency (information and disclosure)
 Seamless service (systems and providers working together effectively)
 Engagement (listening to and advocating for the patient)
Transparency
 Patients want to know about errors, clinicians want to be truthful with their patients.
 “Disclosure is a professional obligation…and is a marker of patient-centred care. It
also reflects the transparency of an organisation, which is believed to be a key
component of safe organisations. (Etchegaray, E et al “Error disclosure: a new domain for
safety culture assessment” 2012)

There are different and changing attitudes to transparency:
o “Care givers and organisations that share information about errors with
patients may also be likely to share the information internally.” (Etchegaray, E et
al “Error disclosure: a new domain for safety culture assessment” 2012)
o
Views about patient safety and culture of error disclosure varies across grades
and specialties. (Etchegaray, E et al “Error disclosure: a new domain for safety culture
assessment” 2012)
o
Leaders of health care organisations can target education efforts to highlight
the importance of, and rationale for, disclosure (Durani et al “Junior doctors and
patient safety: evaluating knowledge, attitudes and perceptions of safety climate” 2012)
Seamless service: “Pitcrews, not cowboys”
 Complexities of modern medicine demands that clinicians are no longer working as
“cowboys” – working alone in their specialist filed
 Modern medicine is most effective when it functions like a system – “diverse people
working together to direct their specialised capabilities toward common goals for
patients. They are coordinated by design. They are pit crews.” (Atul Gawande “Cowboys
and Pitcrews” 2011)

It is essential that different units within the same system communicate well (Anthony
Hill “Consumer-centered Care- Seamless Service Needed” 2011)

“Recently, you might be interested to know, I met an actual cowboy. He described to
me how cowboys do their job today, herding thousands of cattle. They have tightly
organized teams, with everyone assigned specific positions and communicating with
each other constantly. They have protocols and checklists for bad weather,
emergencies, the inoculations they must dispense. Even the cowboys, it turns out,
function like pit crews now. It may be time for us to join them.” (Atul Gawande
“Cowboys and Pitcrews” 2011)
Engagement: An engaged consumer is an empowered consumer
 “If health is on the table, then the patient and family must be at the table, every table,
now.” (Leape et al “Transforming healthcare: a safety imperative” 2009)
 There is increasing evidence that involving patients in decision making has positive
effects in terms of patient satisfaction, adherence to treatment regimes and even their
health outcomes (Van Steenkiste et al “Improving cardiovascular risk management: a randomized
control trial on the effect of a decision support tool for patients and physicians” 2007; O’Connor et al
“Decision aids for people facing health treating or screening decisions 2003).

Many doctors aspire to excellence in diagnosing disease. Far fewer, unfortunately
aspire to the same standards of excellence in diagnosing what patients want…
preference misdiagnoses are commonplace. In part, this is because doctors are rarely
made aware that they have made a preference misdiagnosis. It is the silent
misdiagnosis. (Mulley, A., Trimble, C., Elwyn, G, 2012, Patients’ preferences matter. Stop the
silent misdiagnosis. The King’s Fund, p.1)
Recurring themes








Have a learning system
Get the basics right
Read the notes
Ask the questions
Talk with the patient
Listen to the patient and the patient’s family
Ensure continuity of care
Take responsibility
Case studies
Transparency: What information would a reasonable consumer expect to receive? (Opinion
09HDC01565)








Mr A was a fit and active 21 year old. In 2008, he started experiencing headaches
during physical activities
Mr A was diagnosed with Chiari malformation by consultant neurosurgeon, Dr E
Two informed consent discussions took place:
o Discussion one: surgical registrar/trainee, Dr F met with Mr A to explain the
diagnosis further, discuss surgical options and risks, and the operative
technique that would be used to perform the surgery
o Discussion two: Dr E met with Mr A and explained the risks and benefits of
the proposed surgery following initial discussions with Dr F
At no time did Dr F or Dr E inform Mr A of how the surgical team would operate
Mr A consented to surgery
Surgery was performed by surgical registrars/trainees Dr G and Dr F, supervised by
Dr E
During the postoperative period, Mr A was found to be unresponsive and was not able
to be resuscitated
There was no evidence of surgical mishap, pulmonary embolism, excessive morphine
administration, or pre-existing cardiac disease
What information would a reasonable consumer, in Mr A’s circumstances, would expect to
receive?
o Explanation of treatment options available
o An assessment of expected risks
o Side effects, benefits and costs of each option
o Involvement of trainee neurosurgeons?
Dr E’s view: “[I] never gave the family the impression that I would personally be performing
the procedure…the fact that [Dr F] did the informed consent would, I suggest, lead any
reasonable patient to conclude that the operation would not entirely or even partially be
performed by me.”
My Opinion: “Mr A was anxious about the surgery and had doubts about whether to
proceed, in light of the risks. The surgery was elective and not urgent. I consider that a
reasonable consumer in Mr A’s circumstances…would expect to be told that the surgery was
going to be undertaken by neurosurgical trainees, rather than a consultant neurosurgeon.”
Seamless service: A tunnel vision approach to diagnosis (Opinion 10HDC00703)
 In 2002, Ms A had a mastectomy for breast cancer. She was advised that she had an
80% risk of the cancer recurring
 Ms A also had a history of Chronic Regional Pain Syndrome (CRPS)
 In October 2007, Ms A experienced sudden onset of back pain without suffering any
trauma
Ms A’s husband’s view about the DHB’s approach to his wife’s diagnosis: “This portrays a
tunnel vision approach to diagnosis of my wife’s condition, one that once started, no-one
wanted to change. Considering that my wife has 2 chronic illnesses, why did no-one apart
from the ED doctor, think to check the spine for cancer[?] What is more disturbing is the
impression that they would do the same again” (my emphasis)
My opinion: “…this is a case of different services within a district health board each
considering a patient from their own specialist viewpoint, without regard to the bigger picture
of the patient’s presentation and seeking to co-operate with one another to provide continuity
of care to the patient. It is a case where clinicians should have continued to ask the pertinent
questions while the patient was under their care. Instead what resulted was a pattern of
suboptimal care, characterised by missed opportunities to diagnose Ms A’s metastatic bone
disease.”
DHB breached:
• Right 4(1): Failing to adequately investigate Ms A’s back pain
• Right 4(5): The General Medical Team’s failure to communicate adequately with the
Oncology Clinic
Engagement: Listening to the patient (Opinion 10HDC00610)
 Ms A, Māori woman aged 52
 Family history of lung cancer
 Smoked approximately 50 cigarettes per day for more than 20 years
 Had a long-standing dependency on benzodiazepine
 Between June 2008 and February 2010, Ms A consulted Dr B on multiple occasions
 Complained of persistent coughing, chest and throat pain, fever and sweating,
haemoptysis, shortness of breath and coughing up blood
 Dr B diagnosed Ms A with respiratory tract infections and acute pharyngitis
 Prescribed antibiotics and cough medicine
 No record of Dr B physically examining Ms A during this period
 In February 2010, Ms A called Healthline for advice as the pain in her chest was
unbearable. Healthline immediately sent ambulance - admitted to hospital
 Chest X-ray revealed a large mass in lower right lung
 CT scan and lung biopsy confirmed primary lung cancer with extensive metastases in
the liver, lung and mediastinum
 Ms A was referred to palliative care and died a few months later
 Ms A said that from her first visit with Dr B she was “made to feel like [she] was just
a piece of rubbish to be tossed into the rubbish bin”
 Said Dr B labelled her a “drug dependent piece of rubbish” and told her on a number
of occasions that she “depressed” him
 Dr B said he does not recall saying these things
Ms A’s view: “Yes I have cancer and [Dr B] did not pick it up, but what is more important is
the way he treated me. I was never listened to, never sent for tests, never examined or blood
pressures taken, no [X]-rays just prescribed my medication and told to give up smoking. I
had to sit through comments from [Dr B] such as ‘you depress me’. How would that make
you feel [?] …This complaint is important for me as I do not want someone else to have to go
through the same experience. Although I have an addiction for a prescription that has been
provided to me from the medical profession for over 10 years[,] I still deserve health care
and to be treated fairly.”
Why did these adverse events happen?
Where the two roads meet: individual responsibility and organisational responsibility.
Individual or System? (Opinion 09HDC01505)
 Mrs A (aged 61) had a CVA in May 1995 and her gallbladder removed in 1996
 In April 2009 presented to ED at secondary hospital
 Sudden severe right upper abdominal colicky pain, and chest pain radiating to
shoulders, associated with sweating, pallor, nausea and vomiting
 ED medical officer ordered blood tests, liver function tests, and abdominal ultrasound
scan
 Liver function tests normal. Sonographer reported "The gall bladder is not seen and
may be contracted”
 Dr C conducted "limited physical examination“
 Dr C said scars indicative of cholecystectomy had faded significantly in 13 years could not be seen
 Two volumes of notes: Dr C had Vol 2. Mrs A’s old notes, which contained the
records of her 1996 surgery, were not provided to Dr C and he did not request them
 Mrs A’s memory “shocking”- thought she had previously had either kidney or
gallbladder stones
 A pattern of errors. Dr C failed to:
o obtain full and accurate information about Mrs A’s previous medical history
o carry out an adequate pre-operative assessment
o provide adequate information to the woman prior to her consenting to undergo
the surgery
 During the surgery, Dr C misread the anatomy
 Dr C found to have breached Rights 4(1), 4(4), 6(2) and 7(1) of the Code
 DHB had a duty to ensure that the right information reached the right person at the
right time
 Incomplete set of Mrs A’s clinical records provided to clinical team
 DHB breached Right 4(1) of the Code by failing to take reasonable steps to alert Dr C
to the existence of relevant clinical information, which adversely affected the care
provided
Learnings
Systems
“In any healthcare system, there are a series of layers of protections and people, which
together operate to deliver seamless service to a patient. When any one or more of these
layers do not operate optimally, the potential for that level to provide protection, or deliver
services, is compromised” (Opinion 09HDC01883, 15 June 2012)
HDC vision: A consumer-centred system
Engagement
Transparency
Consumer
Centred
System
Culture
Seamless Service